Maddie's Mission

I, I will be king
 And you, you will be queen
 Though nothing will drive them away
 We can beat them, just for one day
 We can be heroes, just for one day

 Though nothing, will keep us together
 We could steal time, just for one day
 We can be heroes, forever and ever
 What d'you say? When I was younger the word hero seemed to be more in style.  I had heroes all around.  They were Dr. J of the Sixers who could slam dunk like no other, the astronauts heading off into space, my father who was able to fix anything personal or material, the fireman who came to visit our school, and the entire Justice League.  Green Lantern was my favorite, but I don't remember if it was because of his cool ring and outfit or because my older brothers already chose the other ones.  (Sorry for the Super Hero diversion, back to the subject.)  Today, the "Hero" title seems tougher to achieve.  While many of us agree that the firemen who raced ...

One, two, three, four Can I run a little more? five, six, seven eight nine ten miles I love you. A, B, C, D Can you run along with me? E, F, G, H, I, J, I love you. Boom, bam, boom, Ooh my hip, Boom, bam, boom, There goes my knee, Boom, bam, boom, The finish line, Boom, bam, boom, Look at me! All together now, All together now, All together now, All together now, All together now, All together now... I'm a runner. All the signs are there... running shoes littering the garage, worn out 5K race t-shirts in the closet, the occasional aching knees, and the wish that maybe one day the passion to run a marathon will appear. Sometimes after miles and miles on the road I've wondered why I run. Seriously, why do people purposely leave the comfort of their sofa to find themselves miles from home with only a pair of worn out sneakers to get them back? Perhaps part of the reason is the adventure, part is to lose a few pounds, part is for therapy, or maybe part is also for something ...

Yesterday we received a letter from our insurance company detailing the costs for last month's Lumizyme treatments.  As I looked down at the amount we owe now that we've met our deductible, I reached for my insurance card, grabbed Maddie's hand, and became Grandpa Joe from Willy Wonka and the Chocolate Factory dancing and singing away to... I never thought my life could be Anything but catastrophe But suddenly I begin to see A bit of good luck for me 'Cause I've got a golden ticket I've got a golden twinkle in my eye I never had a chance to shine Never a happy song to sing But suddenly half the world is mine What an amazing thing 'Cause I've got a golden ticket I've got a golden sun up in the sky And then I started to wonder what the insurance claims specialist must think when they receive yet another invoice from CHOP for those darn Crowley girls.  I imagine it goes something like this... You never give me your money You only...

The AMDA publishes a regular newsletter and contacted us for an article about our experience. Many of you already know the story, but I thought you might be interested. As a younger man I drove the finely paved Los Angeles freeways with ease. Like millions of others, I merged in and out of traffic, easily transferring from one on-ramp to the next at a speed only matched by the pace of city life. Everyone around seemed to follow the same path, eyes on the road, never stop to look around, and never look back. 
 
 Every so often I would notice a strange sight at a fork in the road. A car would have crashed right into the divider between one freeway and another. Why did this happen? Was it because the person was not paying attention, were not sure which direction to go, or were they frozen when forced to make a choice they weren’t prepared for? Whatever the reason I admit I always drove by with a bit of confusion and a bit of humor. After all, doesn’t everyone know which directi...

All the leaves are brown, And the sky is grey, I've been for a walk, On a winter's day I'd be safe and warm, If I was in L.A., California Dreamin' On such a winter's day Last Sunday, Emma boarded a plane to Sunny California with my sister and niece. She is having a great time enjoying the So Cal beaches, great Mexican food, San Diego, shopping, Los Angeles, In-N-Out Burger, Santa Barbara, and most important...family. On Tuesday she'll take her first flight alone and be home just in time for treatment. On August 1st last year we had just returned home from two great weeks in California topped off by my nephew's wedding in Santa Barbara. To remember the trip I sat down with Donna and created a video to share some great photos from our vacation. This was before we knew anything about muscle biopsies, genetic testing, Pompe disease, or Myozyme. It was also before this blog, our wonderful doctors, and the love and support of many friends. Yes...

Hello all, I haven't spoken about fundraising in the blog before because I felt it was more important to focus on our life experiences since the girls' diagnosis. However, a unique opportunity has presented itself from some very special people and I wanted to share it with you. My nephews and nieces in San Diego are training to run a half marathon on August 15th. All funds will go directly to the AMDA, which is a great organization supporting the Pompe community. Please see my niece Meghan's letter below. If you are able to donate, please consider employer matching funds as a way to boost the impact of your donation. Either way, please keep them in your thoughts and continue to check the blog for updates on their success. Thank you. All for two and two for all! Matt ------------------------------- Dear Family and Friends, As most of you know, our two cousins have been diagnosed with Pompe Disease. Maddie and Emma are truly amazing individuals who live each day with j...

When I get older losing my hair, Many years from now, Will you still be sending me a valentine Birthday greetings bottle of wine? If I'd been out till quarter to three, Would you lock the door, Will you still need me, will you still feed me, When I'm sixty-four? Their names were B, Z, D, and E.  I don't recall their real names or if they were my great aunts, third cousin's sisters, or mother's brother's cousin's sisters.  Nor do I remember if they were widows or "old maids" like they used to say.  To a little guy, these details did not matter.  What I do remember is that they were kind and always had stories to tell. On occassion, my mom would take my brothers and I on the 30 minute drive down Rosecrans and over to Long Beach Blvd. for the type of visit that doesn't happen so much anymore.  You see, these were the days before iPhones, video games, email, Facebook, and - gasp - blogs!  This was when cartoon...